The masseuse who pulled my arm out

Life with a disability can sometimes give rise to unspoken questions and sensitivities, but amid the awkwardness there can be humour. The following is an edited version of a sketch by Angela Clarke who has Ehlers-Danlos syndrome, delivered for the BBC at the Edinburgh Fringe Festival.

Image copyright Sarah Dousse

I was away at a fancy spa and thought I'd indulge in a nice relaxing massage as a treat. The softly spoken therapist, who was called something ethereal and calming like Summer or Melody or Zinfandel Blush, told me she would be using an aromatherapy oil of lavender picked by organically trained squirrels and mermaid tears.

The room was painted in calming shades of rice pudding, scented candles flickered around me and music, which sounded like whales fornicating, played in the background. I was so preoccupied with getting onto the high massage table that I forgot to mention a vital piece of information - I have an invisible disability. Big mistake.

I have Ehlers-Danlos syndrome (EDS), a debilitating condition which affects connective tissue like skin and tendons and, among other things, means I injure easily. It's genetic. I got it from my mum. Worst birthday present ever. While some people with EDS have no complications, other than being super-flexible, I get chronic pain, frequent dislocations, and mobility issues. Mum, on the other hand, got straight into advanced yoga.

There were no signs when I was a kid, except I could put my feet over my head and dislocate my little finger and then pop it back in. In my 20s things started to go awry. First my feet hurt, then my knees, then my ankles stopped working, then my legs. Huge bruises would appear from nowhere and I wouldn't be able to walk without clutching onto the nearest person or wall. This went on for six years.

First they thought it was arthritis, then they thought it was multiple sclerosis, then lupus, then arthritis again, then fibromyalgia.

Image copyright Sarah Dousse

When they ran out of things to test for, they figured there was only one thing left - hypochondria. They treated me like a Victorian lady with a case of the vapours. Then one lone physio pointed out that my knees bent backwards - the wrong way. I thought I had whatever that girl in the Exorcist had. I'm possessed.

My physio suggested I see a specialist. The specialist established my head doesn't rotate like Linda Blair's in the horror film, but my torso does twist 180 degrees. My skin is silky soft - it says so in my medical notes - and I didn't crawl as a baby, but bum-shuffled and then stood, which is a classic symptom of EDS. I can't hold a pen properly, my joints move further than they should, I fall over a lot and sleep frequently. I just thought I was a rubbish adult, but it turns out it's a multi-systemic condition, so everything I'd suffered related to this one disorder.

So there I am, blissed out on the massage table. Zinfandel Blush has marinated me like a chicken breast. The whales are climaxing in the background, and I'm drifting off to sleep. She runs her oil-covered hands down my arm and gives it a gentle tug to stretch out my stiff shoulder, but it just keeps coming, until pop! It comes clean out of the socket. Dislocated.

Now I am very much awake. Zinfandel Blush is screaming. She has literally just pulled a client apart with her bare hands. The door is flung open and the manager comes running in. The therapist's face is covered in tear-streaked mascara and her blonde top-knot is flailing around like my dislocated arm. The manager slams on the lights, hits the fire alarm and yells about an ambulance.

I am too preoccupied to explain that I dislocate frequently. That my jaw fell out in Costa just the other day. And that this, whilst being painful and understandably alarming to innocent bystanders, is a regular occurrence. Wearing only the paper pants the spa gave me, I flip myself onto my back, flashing my boobs at the gawping crowd gathered at the door. I put my shoulder against the bed and use my body weight to press. There is a loud crunch. And my arm goes back into its socket.

Zinfandel Blush turns a funny colour. The manager passes out. And I exhale in relief. They didn't charge me for the massage. In fact they gave me a free scented candle, which arguably makes it profitable. EDS isn't going to kill me. But things do pop out. My physio MOTs me like a car and, if I dislocate something, asks what I was doing when it happened so we can analyse triggers.

That method made the time he had to put my hip back in after it dislocated during sex with my husband, a bit awkward. Not least, because his follow up advice is always the same: "Well you'll know not to do that next time." But I've learned from things like the dislocating massage. No matter what the situation, no matter how funny it is, you cannot, under any circumstance, pull my leg.

Storytelling Live: Tales of the Misunderstood

Angela was one of seven people with a disability or mental health difficulty to perform a story about awkward moments as part of BBC Ouch's storytelling event at the Edinburgh Fringe Festival.

Look out for more stories over the next few weeks as well as a special TV programme which brings all the tales together.

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